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SENSE registry for status epilepticus.

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Treatment for status epilepticus (SE) is poorly understood. A multicenter registry in German-speaking countries documented 1179 SE episodes, revealing common etiologies, semiologies, and treatment practices, with nearly half of patients experiencing refractory SE.

Keywords:
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Area of Science:

  • Neurology
  • Clinical Medicine
  • Epileptology

Background:

  • Limited evidence exists for status epilepticus (SE) treatment, with few large randomized controlled trials.
  • Existing treatment guidelines are based on scarce data, necessitating real-world practice documentation.

Purpose of the Study:

  • To prospectively document treatment practices for status epilepticus (SE) across multiple large hospitals in German-speaking countries.
  • To gather data on patient demographics, SE etiology, semiology, and treatment timeliness and modalities.

Main Methods:

  • A multicenter registry was established in 8 hospitals in Germany, Austria, and Switzerland.
  • Data from 1049 patients (1179 SE episodes) treated over 4 years were collected.
  • Information included patient age, SE etiology, semiology, comorbidities, and treatment details.

Main Results:

  • The median patient age was 70 years, with remote and acute factors being the most frequent etiologies.
  • Generalized convulsive SE occurred in 44%, focal motor in 27%, and nonconvulsive SE in 30% of cases.
  • Median latency to first treatment was 1 hour; 32% received treatment within 30 minutes. Benzodiazepines were the first-line treatment in over 80% of cases, followed by levetiracetam in 15%.
  • Refractory SE (ongoing after first-line treatment) occurred in 49% of patients.

Conclusions:

  • Real-world data from this registry provide valuable insights into status epilepticus (SE) treatment practices.
  • The high rate of refractory SE highlights the need for further research and optimized treatment strategies.
  • These findings can inform hypothesis generation and clinical trial design for SE management.